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Living Loudly

Who knew I could feel so happy and alive inside and my body could feel so tired and pained at the same time? It comes with the territory. Let me ‘splain…

A few years ago I found out that I had cancer in my thyroid. Barely thirty years old and three young boys to raise, it got my attention. I have been a bit of a research junkie my entire life, but when I saw the pathology report and learned that Hashimoto’s disease and cancer were invading my throat it became a somewhat part-time job of mine to stay well educated alongside my doctors. I want to see my children graduate high school and possibly college. To dance with them at their weddings and to kiss my first grand baby one day. Naturally when I was assured that the cancer in my throat was completely removed with surgery and some minor radioactive pills, it stopped my heartbeat for a moment to learn that I had cancer in my bladder.

It was stage 0 and I was brought in immediately to take out the cells, biopsy them and make sure none were left inside. But this is a cancer that comes back. And when it does, the cells need to be removed or else it turns into stage 1 bladder cancer. The survival rate beyond 5 years decreases dramatically beyond stage 1. I take very good care of myself. When I get sick I visit the oncologist who removed the original cells and handles all my additional bladder needs. This includes a process called dilation, which numbs my bladder because I suffer from a condition called Interstitial Cystitis. And, yes I do mean suffer as it is extremely painful. The flare ups are a bit like labor pains. It played a very minor role in putting my kids in school for a bit after homeschooling for so many years. IC is a progressive condition. When a woman is diagnosed with bladder cancer, especially at my age, IC is usually present right along with it. I joined a support group for IC because it’s now medically recognized as one of the top 10 most painful conditions affecting American women today. In an effort to talk about anything except cancer with my family I decided to make support groups my sounding board, my shoulder to cry on and my venting place. I just wanted to be Jackie in real life. Wife and mother and daughter and sister. I never wanted to be sick girl or the girl with cancer. And those of you living with cancer know what I mean.

I am not terminal. I am not dying of cancer, but living with it. Fortunately I have a very treatable stage 0, which doesn’t occur in many of the organs, but it does in the bladder. I am lucky because I have been a stage 0 for a year and a half. The worst things for me… lack of sleep and being on my feet for periods of time. Best things for me… lots and lots of rest and sleep and small amounts of walking, unless I am bleeding or in pain. It has been through the love and support of those around me that I remain well rested, stress free, and in a non-toxic environment. No man or woman is an island. I also like to think I have guardian angels who look out for me.

Recently my health took a bit of a nosedive. It came right on the heels of an emotionally draining time. The two are very closely related and I believe that getting strong as I seek to forgive & find peace within myself, the connection between my body, mind and soul will give me my best shot at staying a stage 0. It’s been a while since my last biopsy and unfortunately I need another one. In a perfect world, it would be immediately. I’ve not felt well in the last few days and while I’ve been sick before, these changes are ones I was told to watch for by my oncologist. Staying off my feet and getting more sleep than the average person doesn’t fly when I’ve got to get a part time job. One that has me doing the exact opposite of what good ol’ doc told me to do in order to keep my bladder healthy. I can’t work a night job and stay off my feet. The stress of the conflict alone has caused my morning pee to turn bloody. That’s actually the least gross thing happening to me right now, as fellow bladder cancer survivors and IC sufferers will agree. I’m wearing make-shift diapers. Because we can’t afford real adult diapers. Trying to get a comfy night’s rest in a diaper made of tissue and padding is awesome. Not.

My youngest son turns 7 this week. Due to circumstances beyond our control we lost income we had needed. Income outside of what my Husband was making. So… every penny goes to our home and our bills and what’s left we use to buy food with. Let’s just say that we are finding ways to get real creative with rice and beans! Thanks to a dear family friend we have a gift for our son’s birthday and Husband is taking a paid day off work to make it extra special. But it couldn’t be a more awful time to be on the losing end of a broken agreement.

As for the biopsy and procedure to remove any malignant cells, well… I’ll let you know how it goes when we get the money. We never would have moved here had we known that the terms were conditional and that we would need every spare penny to continue to finish out the lease. I feel like my life and the most valuable people in it became bargaining chips to others. And I feel betrayed. Because I let someone get close to my family and found out that you really can’t trust anyone these days. Cancer has made me a strong fighter. I fight for my health and for time on this earth. Which makes fighting for my family a gosh darn cake walk compared to what I’ve lived through already.

I did everything I could to spare friends and loved ones the gory details of my cancer… who wants to talk about cancer all the time? Which is what happens when some people find out I have been diagnosed. Others have been great friends who continue to treat me as though I am the same Jackie I’ve always been. And I appreciate and value them so much.

Us cancer folks, we sure are dramatic and problematic! Kidding. Actually, it’s the cancer support group friends who are the most comfortable in talking about life and death and everything in between in the most honest and rational ways. Do you know what it feels like to have stage 0 cancer? Confusing. I am not obviously sick. I don’t get chemo treatments or radiation therapy. But I deal with the pain of real cancer. I feel the panic when I see blood in places I shouldn’t bleed. I need to eat well and sleep a LOT in order to stay healthy. People, even those who know I have cancer, have alluded to my laziness. I’ve learned to deal with the self-centeredness of people without cancer with a heaping spoonful of grace. Because it’s a problem you can’t understand until you or your spouse go through it. It’s all consuming during times of sickness. And at best, it’s the lurking nightmare waiting for me to close my eyes so it can strike during times of wellness. Yeah, I don’t have cancer in the muscle wall of my bladder. It’s only a stage 0. So I don’t get to complain. Not like the people who lose their hair or deal with radiation exhaustion, which I’ve heard is a million times worse than normal cancer exhaustion. I don’t want attention from people so I don’t talk about it with anyone other than my family (hubby and sons), my doctors and my support group. But that doesn’t mean it doesn’t exist. I simply choose to live my life outside of the “cancer girl” label.

We were hit hard with an unexpected financial loss. I am waiting on that miracle that I know is coming because God would never leave me hanging, I hope. Positive expectations and prayer are sturdy legs to stand on when the future is unclear. My biopsy co-pay alone is hundreds of dollars and due at the time of the procedure. Then we make payments on all the other procedures done while I’m under anesthesia, like removing suspicious cells and dilation treatments. We are still making payments from my last one. Which was over a year ago. I need to not put any stress on myself right now. I need to stay off my feet until I am medically cleared as it can mean the difference between a simple procedure and complete chemo/fighting for my life struggle. I am so tired that it has taken me about a week to write this. I get a paragraph along and then fall asleep. I’m not lazy. I’m living the best life I can with cancer. Yes, it’s stage 0 and it is scary. No, I won’t feel sorry for me or allow anyone else to feel sorry for me either because I am loved and valued by some pretty amazing men in my household! The best part of randomly falling asleep at the computer? Being awakened by my boys kissing me as they nudge me with their dirty little hands from playing outside all afternoon. I love waking to their gentle touches on my arm. Their skin still so smooth and smoochable, even when covered in a layer of mud. I will not leave them. I will live to see them happily achieving their dreams as grown men before this defective bladder takes me out. It’ll be quite a while because I’m not done raising them, and I’m not done accomplishing my goals.

It’s been a while since posting and I guess I just haven’t had much material to work with, as writing comes from my blood, from my heart. I got sick this week and it reminded me of all I have left to do. So I have to get better. And there it is… something to blog about. I am LIVING with cancer. And today I am in the lead because I got to wake up and kiss each one of my sons and I finally got to finish my blog post. So have a wonderful week friends. And just in case I don’t write again for a bit, have a really happy summer! Grow lots of fruits and veggies, herbs and flowers. Make the most of this wonderful season!